Finding Your Tribe: How to Connect With Other MBC Warriors for Hope and Honest Support

Metastatic breast cancer (MBC) is defined as breast cancer that spreads beyond the breast and lymph nodes to other organs, such as the bones or lungs. Finding out you have this form of breast cancer can be disorienting and upsetting, but the positive news is that MBC has morphed into a chronic disease, rather than a death sentence, says Mari Montesano, LCSW, a Canby, Oregon–based social worker and manager of the Susan G. Komen Breast Care Helpline. “Women are living and thriving with it. Yet it’s still a unique experience, and one that demands a lot of attention over the long haul,” she says.

If you’ve been in a breast cancer support group previously, you may start to feel that you need a bit more than it can offer: information specific to your metastatic breast cancer diagnosis and treatment options from people who’ve recently been where you are now, who can offer connection, wisdom, and understanding. It may be time to find a support group tailored specifically for women who have MBC.

Joining an MBC support group gives you immediate access to women who may be new to the diagnosis, as well as women months and years into their journey — all of whom will have different perspectives, information, and advice. “When I started conducting support groups for women with metastatic cancer twenty years ago, the main issues we discussed were fears and anxieties about what was happening, and end-of-life planning,” says Montesano. These days, by contrast, it’s more hopeful and inspirational, she says.

Metastatic support groups can offer:

• Understanding Women undergoing treatment for MBC may not always “look” like they have cancer, says Montesano. “If you’re on an oral chemotherapy or other types of treatment, you may not appear sick, or lose your hair,” she says. But looking fine and feeling fine are two different things, and that’s something women who’ve lived longer with MBC understand in ways even your most supportive family members or friends might not grasp.
• Less Isolation Speaking of friends and family: “Many women with MBC feel they’ve already ‘overloaded’ their loved ones,” says Lois Goetz, a bilingual social worker and facilitator of the Metastatic Support Group at the Adelphi New York Statewide Breast Cancer Hotline and Support Program in Garden City, New York. Even if that’s not true, you might find yourself holding back from talking as much as you did earlier in your treatment about what you’re going through. That can lead to a sense of isolation, which a support group can help alleviate.
• Symptom Management Because the other women in an MBC support group will be at different points in their treatment, they are likely to have information on a range of treatments and their side effects “Someone will say, ‘I was just switched to this treatment regimen,’ and other women who’ve been on the same therapy for longer can offer advice, and let them know when a symptom is troubling enough that they should call their doctor,” says Montesano. That peer-to-peer information is invaluable.
• Connection Over Practical Concerns Women in MBC support groups are still women — with jobs and families and other concerns. “Our members talk about the everyday stuff, struggles with children, with work, with health insurance,” says Montesano.

Finding support groups isn’t necessarily difficult — but finding the one that best fits your needs, your schedule, and your personality can be tricky sometimes. Don’t be surprised if it takes a few tries to find a group you vibe with.

Give some thought to the type of group you prefer, says Goetz. There are groups for Spanish-speaking women, newly diagnosed women, younger women, older women.

Step one, says Montesano: Talk to the social worker or nurse navigator at your cancer center or your oncologist’s office. “That person can usually recommend a few options in your community, or through the cancer center itself,” she says.

Online Communities and Forums

If you’re unable to attend an in-person support group — they’re too far, or not at a time that’s convenient for you — or if your in-person option is at the cancer center and you don’t care to go back there just now, virtual support groups can be ideal. Virtual options may also feel safer and more comfortable.

Ways to find an online community:

• Start with a call to your cancer center social worker or nurse navigator.
• Call or contact breast cancer organizations (such as those mentioned above) for recommendations.
• Join online forums (such as those on Facebook or Reddit). “Facebook and similar outlets have myriad groups to choose from,” says Montesano. Just be sure that there’s a healthcare professional or a professional organization behind them. “Only join groups that ask you questions upfront before you can join, which is a way to know that they are moderated,” says Montesano.

You can also reach out to local or national organizations, such as the Susan G. Komen Foundation, Breastcancer.org, the American Cancer Society, or Living Beyond Breast Cancer, which offer online options. Many of these groups also have helplines you can call for advice.

In any support group, protecting your privacy and feeling safe should be paramount. Ask to see the group’s privacy guidelines. “Our groups are run on Zoom, but we have HIPAA protections in place, and we never record anything,” says Goetz.

Of course, the point of a support group is to share, for your benefit and that of your fellow members, says Montesano. “We do want people to talk about their diagnosis and treatment because that helps create a sense of community. And when others in the group have more information about you, they can be more personally supportive.” That said, it can take time to feel comfortable and it’s okay to be reserved or quiet for a while as you build up your own sense of trust.

In a virtual group, you can take further steps to shield your identity by staying off camera, if you prefer, and holding back identifying details about yourself, your diagnosis, or your family until you feel comfortable. “There’s no right way to be in a group. You can always change your mind later and share more as you feel safer,” says Montesano.

Depression and anxiety can occur after a cancer diagnosis regardless of the stage. Be aware of times you may start experiencing negative or intrusive thoughts that take away from your quality of life significantly, says Montesano.

“Symptoms of a problem that might need more professional help include racing thoughts that you can’t stop, crying all the time, sleeping too much — even given that you may feel sleepy with certain medications — and not getting any enjoyment out of your life,” says Montesano. In that case, please reach out to the facilitator of the group, or call your doctor, a social worker, or nurse navigator at your cancer center for referral to a therapist or psychologist.

“It's okay to need even more support; it’s okay to need medication. It's all a part of the diagnosis and treatment of MBC,” says Montesano. “Sometimes, in fact, being in a support group is what brings out those issues that you may need additional help with. That’s why we’re here.”

• Women newly diagnosed with metastatic breast cancer may find a support group specifically for women with MBC valuable.
• Support groups for people with MBC offer many benefits, including reducing isolation, finding community, and getting helpful information about MBC and its treatments.
• Find a reputable organization that offers support groups, whether in person or virtual. Seek groups that are moderated and that you are comfortable with.
• If you are experiencing depressive symptoms, reach out to your doctor or your group’s moderator for a referral to a therapist.